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BEYOND TREATMENT LOGISTICS

The personal attention you deserve

Uninterrupted access to treatment is our number one goal, but it’s not our only one. We know families receiving treatment for Duchenne need more than just medicine. That’s why we’re committed to connecting you to support that goes beyond treatment logistics. Together with our Patient Engagement partners, PTC can help connect you with the right information when you need it.

Practical support

Not sure where to start when looking for a Duchenne specialist in your area? Need a contractor who knows how to modify your home for better accessibility? Our Patient Engagement Team can connect you to the Duchenne community within your region, so they can help you find the information and resources you need.

Emotional support

Looking to connect with other families living with Duchenne? Want to discuss the details of a Duchenne-related decision your family needs to make? Just need someone to talk to when you’re having a particularly hard day? Whatever the issue, we can get you connected to a network of support, including our Patient Engagement Team, our Peer Navigator Program, or patient advocacy groups. We’re always just a phone call away and ready to listen.

CONNECT WITH PEERS

Support from someone who’s been there

Learning how others have managed challenges and achieved successes can help you gain insight into decisions you may need to make for your family. Our Peer Navigator Program can connect you with other families who understand your journey. Your family can choose to speak with English- or Spanish-speaking navigators, according to your preferences.

Your Case Manager can help you connect with a Peer Navigator or you can contact the program directly at:



Say hello to some of our Peer Navigators

Watch Peer Navigator Jessica Rothe deconstruct misperceptions about the limitations for boys with Duchenne muscular dystrophy.

Watch Peer Navigator Sima Perez talk about overcoming some of the hurdles that parents may face when it comes to school.

Watch Peer Navigator Sima Perez talk about the importance of self-care and support for caregivers.

PATIENT ADVOCACY GROUPS

Connecting with the community

Patient advocacy groups provide education, resources, and support to members of the Duchenne community. The groups listed below are just a few of many organizations. Talk to your Case Manager for more information about advocacy groups and how they might be able to help your family.

CureDuchenne is a nonprofit organization that supports Duchenne-related research and features events, workshops, webinars, and more on their website.

Visit

Parent Project Muscular Dystrophy (PPMD) centers provide comprehensive care specifically for people living with Duchenne muscular dystrophy.

Visit

Muscular Dystrophy Association (MDA) has more than 150 care clinics in the United States and Puerto Rico, each home to a full team of healthcare professionals.

Visit

The Akari Foundation is dedicated to educating, empowering, and advocating for Hispanic immigrant and low-income families who live with Duchenne muscular dystrophy.

Visit

Jett Foundation partners with individuals and families with Duchenne muscular dystrophy and other neuromuscular diseases through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments.

Visit

The Assistance Fund (TAF) helps patients with high medical out-of-pocket costs. For eligible patients, the fund provides financial assistance to cover costs not paid for by insurance.

Visit

PTC does not warrant, whether expressed or implied, that the list of centers is accurate or complete. PTC does not recommend or endorse any center, hospital, or healthcare professional included above for any purpose, nor is the list to verify a center’s, hospital’s, or specific healthcare professional’s credentials or qualifications. It is your responsibility to select a center, hospital, and/or healthcare professional appropriate for your needs and you assume full responsibility for your interactions with any center, hospital, or healthcare professional you contact through the center list. PTC is not responsible for the medical care or advice given by any center, hospital, or healthcare professional you choose to contact.

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